Static Nonsense* is a disabled blogger I’ve known for a year or two. We follow each other’s blogs and tweets. SN periodically tweets about problems at work, including disability-related issues, but it was not until I saw recent tweets like this one that I knew who SN’s employer was:

The issues at the heart of the strike – a living wage, safe working conditions, fair and respectful treatment, lack of affordable healthcare, consistent scheduling – are relevant to all. However, as I learned during this interview, disabled and elderly workers are particularly vulnerable to ill-treatment by the retail giant.

While the media focus on strikes and protests has not included Maine, there are 22 Walmarts in Maine, employing approximately 7500 Maine citizens. According to data collected by the Maine Department of Health and Human Services in 2005, Walmart has more employees on public assistance than any other Maine employer – even though it’s the state’s second-largest employer (the first is Hannaford). The study found that more than ten percent of the state’s Walmart employees rely on state assistance such as Medicaid, Food Stamps, and Temporary Assistance for Needy Families, making the workers’ issues directly relevant to the Pine Tree State.

Thus, I was very excited to have a long chat online last night with SN about what it’s like to be a disabled employee of Walmart in Maine, and what SN hopes the strikes might accomplish.

Question: You’ve indicated that it’s important to you to maintain anonymity in part because of personal matters. Do you also have concerns about being identified as speaking about what it’s like to work at Walmart?

There is that, too. Unlike a lot of other states, Maine has a fairly small population and it’s not the most diverse of places. As such, situations as specific as mine – my specific set of disabilities – are a lot easier to identify. With such a low population, when you’re a part of a minority of any sort it becomes really obvious. I don’t fear specific retaliation such as being fired or anything, but I err on the side of caution anyway because given the company, it does still technically pose a risk.

My current job is on a shaky foundation, so I have to be careful not to rock that too much.

No Response to [FMLA] Medical Leave Request

Q: Why does it feel shaky?

I’m sort of hanging between professional warnings. Because of how much my conditions vary, there are days that I miss from work. I don’t remember the specific number of sick days that we’re allowed; I think it’s either three or six through a rolling period of six months. [During] winter or if one of my ribs gets shifted out of place, I can use up a lot more than that.

I applied for an intermittent medical leave [under the federal Family and Medical Leave Act (FMLA)] over a year ago specifically to cover that issue. But I never heard word back from either our store’s human resources department or from the head office. According to my boss, he doesn’t see anything of the sort on my file.

I had a coaching about my attendance on my last yearly evaluation, because I would call in [sick] on days where I felt I wasn’t in a good enough shape to do a decent job at work, or it was unsafe for me to do so. I was under the impression that my FMLA would have covered it; I only just found out that so far, it hasn’t, because we don’t even know if it’s gone through or not.

My current diagnoses are fibromyalgia, body-wide juvenile onset polyarthritis, scoliosis, and schizotypal personality disorder. There are others that I deal with as well, but they’re not officially on record as a diagnosed condition, such as my joint hypermobility and my chemical sensitivities. The hypermobility is what causes my ribs to shift in and out of place periodically, which can leave me in quite a bit of pain for several days, especially since my job is manual labor.

The arthritis and fibromyalgia can flare with various environmental factors like the weather and rainy or snowy seasons. So yeah, they fluctuate a lot. Some things can be predicted, like if I pay attention to the weather, but other contributing factors, such as stress, can’t really be predicted as easily. Unless it’s the Christmas season and you work retail. That you can pretty much guarantee is stressful!

Q: You applied for intermittent leave under the FMLA to allow more sick days during a flare? And your employer never responded. Is that right?

Yes. This happened around the same time that I submitted my accommodation requests to the head office [for reasonable accommodations under the Americans with Disabilities Act]. I heard back about the accommodations, but never about the intermittent leave.

The specific accommodations I requested, during March 2011, was a lifting restriction of 10 pounds – to avoid making my ribs shift and causing injury, being exempt from register duty in order to avoid joint injuries, and not being scheduled for shifts longer than six hours.

Missing Stools, Removing Benches; the Stress of Phone Calls

Q: Were the accommodations granted?

I was transferred to a different job position, and I now have access to a stool during shifts where I can sit down and rest for up to 20 minutes per hour. The job requirements of the position I’m in now states I’m only expected to lift up to 10 pounds on a regular basis, and since I now work in what’s called a service area, I can no longer be requested to run register when the store is busy.

Service area means I work in a location where I am expected to be present at all times in order to assist customers that need the service of that area. So places like the jewelry counter, the deli and bakery, and Tire Lube Express. I work in the fitting room and answer the phone for the entire store.

Q: I’m interested that you are allowed a stool because I read a post about problems disabled Walmart employees face. It says, “All chairs and stools have been removed from all Wal-Mart sales floors to keep employees from sitting while in view of customers,” including in cases where injured or elderly employees have said they need to sit sometimes to be able to work their whole shift.

That standing on the sales floor policy is real. People can get in big trouble for sitting down if they don’t have ADA accommodations. It’s also why I’m only “allowed” [to sit] 20 minutes per hour.

Q: I’d guess that a lot of people don’t know that they can request a reasonable accommodation, such as a stool. Has that been your experience?

Yep, took me this long even though I’ve been a cane user since 2007. We do have some [associates] that use [accommodations] but not many. Though I have noticed that we don’t have enough stools to go around. Sometimes mine goes MIA. My store is pretty lenient on the [sitting issue], though that may change. Our new store manager wants to take the fitting room’s bench away because our elderly associates sit down on it. And three of us have stools! His line of thinking is so ridiculous.

Q: In other ways, does this new position you were transferred to work for you

It’s easier on me physically at times, since I don’t have to lift boxes or heavier merchandise like strollers. Dealing with smaller items like bras and their straps can be hard for my hands though. And because I also sort items that have been returned, I’m also frequently exposed to clothing washed with fragranced laundry products.

The stress of the phone calls can be really terrible, though. Since I transferred to this position, there have been days where I didn’t go to work because I knew I couldn’t mentally handle it. We get some rather nasty calls, especially in high traffic seasons like Christmas. People get upset because they all want to reach the same department, on multiple lines, and [the people in each department] can only answer one [call] at a time.

I’m frequently the buffer zone for callers’ mistreatment since I’m the first person they speak to – or the only person, if the call isn’t being answered by a particular department and it loops back to me. And then there are instances where even management doesn’t want to answer a phone call – even when it’s part of their job – and I’m left trying to defuse the situation, with little training to do so.

Retail is rough. A lot of customers treat us like cattle. Much like management frequently does. It’s usually one or the other.

Older and Injured Workers Required to Unload Trucks

Q: How do you feel treated like cattle?

There are times where associates get pulled to do different jobs that they’re not even trained for. For example, when trucks of merchandise come in. On several occasions, management has pulled associates from my department to help unload the merchandise from the trucks. I’m exempt from it since I’m in a service area, but I’ve done it before when I was a cashier, and I’ve worked in warehouses before. It is not an easy thing to do, and it can be very intense on the body. Several of our associates are elderly, in their 50s or even 60s and higher. I remember one instance where a 60-something woman injured her shoulder pulling a truck. She developed bursitis from it. When a manager asked her to do it again, she pointed out that she couldn’t; she was dealing with a shoulder injury. They claimed that since it wasn’t officially on record as a limitation, it didn’t matter.

Warehouse workers have specific safety regulations, such as encouraging the use of back braces and proper lifting, much of which we do not have to do in our current positions, so we don’t have access to those braces and the like. I have a back brace, but it’s a personal, so I’m an exception.

Q: Would you like your fellow associates’ health and safety needs to be taken into consideration by your employer?

Oh gods yes. We have another associate with a knee injury. I heard at one point that they made her pull a truck too, even though she’s on accommodations like I am. I think the only reason why they haven’t been able to make me do it is because I’m in a service area. That is my one protection

Another example [of workplace safety problems] is when [I was working as] a cashier. After I got my ribs adjusted I had numbness and poor movement in the entire right half of my body and could barely use my arm or hand. They made me run register anyway, with one arm, because I didn’t have a note.

It frequently feels like our health is supposed to be our responsibility alone, and that their concerns about it are simply lip service. Our training includes how precious [our health] supposed to be – about proper handling of chemicals or spills that include things like bodily fluids – but anything past that training doesn’t seem to matter.

Desire for Communication and Follow-Through

Q: If there was support for you and your fellow associates, what would it look like? How would you like things to be?

Encouragement for intercommunication would be nice. We have an open door policy, but that only goes so far. I remember one time I tried to report an incident of associates making abuse jokes in the break room, and I asked for sensitivity training. I got in the door fine, but nothing happened after that point.

Managers should be more willing to work with individuals or groups to address their concerns and needs. It doesn’t help that some of our managers appear to have a high turnover rate, like my department. Since I started there, we have had three different assistant managers, two zone managers and at least two department managers. People aren’t really there long enough to establish a trusting relationship, which is what you really need when you’re dealing with a management system. And some that have been there for a while feel like they’ve become callous over the years, or just aloof.

I don’t know if the turnover rate is the same in other departments or not. I suspect that ours is because our department covers so many different sections under one heading – Mens, Boys, Girls, Infants, Ladies, Ladies Accessories, Shoes, and Jewelry. The others are much smaller. Ours appears to be very stressful and chaotic to maintain, and there’s a lot of drama between associates.

Q: So your experience is that the door is open, but then after you’ve gone through the door, what? Alice disappears down the rabbit hole?

Exactly. It varies so much between managers, though. My current boss isn’t too bad, though sometimes it’s hard to tell if what he says is company policy or not. With others, it’s like they’re sitting there, nodding and listening, but it’s just going in one ear and out the other. And frequently they contradict each other. One manager will say they’re allowed to do something, while another will say they’re not.

Like the manager that pulls our associates for trucks – our boss insists that [the other manager] is not allowed to take our associates like that, but she does it anyway. No one stops her. I tell the associates to hide when she goes calling for them, praying that she doesn’t come hunting us down. . . .

Encouraged to Quit Due to Disabilities

Q: How long have you worked at Walmart?

Several years, off and on. This is my third time working at this particular store. I started shortly after high school, before I went to college for the first time, so that was two or three months there. A second time before I moved to New York, after my warehouse job, I think that was another year. And this time I started in July 2010.

The first two times I worked [at Walmart], it wasn’t that bad. But that was before I [brought up] my disabilities with them because at the time, [my disabilities] weren’t causing me many issues, so I didn’t want to expose myself to trouble when I didn’t have to. Though that is when that one arm thing happened.

It was the third time, this current time around, that things started getting messy because of how much my illnesses have been affecting my life overall. That’s when I started speaking out more about it. That’s when mistreatment started to become more clear; I could see how it was happening to people around me just as it was happening to me.

Q: Let’s talk about some examples. You tweeted this on November 1:

…the lowest number of hours i can work per week is 16. my boss suggested that i “leave until [i] feel better.” #walmart #disability

What’s the story here? What did he mean? I’m particularly curious because you requested leave under FMLA and got no response.

He knows that the winter season makes my conditions flare more in comparison to other seasons. That’s one of the reasons why I was trying to get my hours reduced, especially since I’m attending school at the same time, which just makes things even harder and more stressful. So he said that I could leave to take a break until I felt healthy enough to work again. He also said that I’d be leaving on a good note, suggesting I’d be able to return without issue, but with the attendance issue that could change.

I’m just flabbergasted that his first response was telling me to quit. What kind of boss says that to someone that’s been dedicated about working?!

He also said that they would try to get me a copy of the writing that said that requirement, because I explicitly asked for it because no one else had ever mentioned it as a possibility before. Haven’t seen any such papers.

Q: The requirement/papers you’re referring to is the supposed requirement that you have to work 16 or more hours, even though you have a reasonable accommodation granted that you work 12 hours a week max?

Correct. Though the accommodations don’t include the 12 hour restriction. That came from an hourly availability request that doesn’t link to the ADA. I didn’t ask for the 12 hour a week restriction until much later, July of this year, due to a really bad Fibro flare. The request did come from my doctor.

And when I spoke to my immediate supervisor, our department manager, about my schedule not having any hours for the next two weeks and mentioned the 16 hours thing . . . he looked surprised as hell, as if he had never heard of such a limit.

Q: Oh yes. I saw your three tweets about the scheduling weirdness on November 12:

…ok. something’s wrong. two weeks in a row and i don’t have any hours scheduled for work. what the fuck is going on?

i expected the one week to be a fluke. but two? back to back?

if this is ‘punishment’ for asking for limited hours for the sake of my health and education, i’m going to be pissed right the hell off.

That was also the same day that I watched the system bring up that I had a weekly restriction of 12 hours – the same restriction I had been trying to get for months. It didn’t bring any protest about being under 16. Just that we were trying to schedule me for more than 12.

After speaking with my supervisor about the lack of hours, I don’t think it was [retaliation], no.

Q: So, your boss – the guy who suggested you quit – is that a different person than your immediate supervisor/department manager?

Correct. For some reason, we have an oddly high number of management positions. That’s also something that’s bothered me. There are so many different kinds of “managers” that one can go to, and sometimes it’s hard to tell who you’re supposed to be speaking to, or even what their position is. Some of the ones I can think of off the top of my head are Customer Service Managers, Department Managers, Assistant Managers, Zone Managers, Shift Managers, Co-Managers, and the Store Manager It’s even more frustrating when one manager says that another manager can take care of something, but they can’t, or they say they can’t.

It’s especially confusing when a customer says they want to speak to management, and they don’t understand why you ask what they’re inquiring about so you can get the right manager. Honestly, I agree with them, I don’t know why we have so many either! When people are like, “I just want a manager,” we can’t explain that we don’t have just managers.

Stymied in Efforts to Provide Quality Customer Care

Q: You’ve mentioned being “dedicated” to your job and wanting to do right by the customers. I get a feeling that you take pride in providing good customer service. Do you feel frustrated when you’re not able to do that?

Very much so. I enjoy being able to help people, even if it’s just helping them find something. If I can do something to make a person’s life easier for them, even just something small, that’s enough for me. It’s what drives me about a lot of things, including activism and even just being friends with people.

But when I have to constantly jump flaming hoops, or when it seems like those hoops are constantly moving when I’m trying to reach a goal, it frustrates both me and the person I’m trying to help. I can’t get them access to the things that they need on the other side, and it makes me feel sad inside, quite deeply.

I feel like I would enjoy my job a lot more if the system I was working in didn’t feel so stilted and broken.

Q: Is that one of the reasons you have returned to work for Walmart – to provide good customer services?

That’s part of why I’ve returned there, yeah. The other part is that around here, it seems like they’re the only place that will hire me. Be it due to the economy or disability [discrimination]. A lot of customers don’t seem to realize that there are some of us who legitimately want to help them. It’s hard to know what they think in terms of my specific situation, since my job is pretty much the pillar point of giving them access to one department or another, or management. I don’t know if they consider it to be a failing on my part (though sometimes that becomes pretty clear) or if they think the failure is on the side I’m trying to reach.

It’s easier for them to tell the struggles when they’re physically there with me, because they can see me trying to get a hold of the managers. When you’re on hold on the phone though, you can’t see that.

The fact that I work nights makes it even harder. There’s a lot less people working, then. So you can’t reach [managers] as easily.

As someone who works the phones, I will admit right off that I don’t even like calling our store. It’s terrible. Even when we really try, sometimes we have to redirect calls five times to get through, or customers will be waiting half an hour.

And part of it is because departments seem to be poorly managed and disconnected – even with the number of managers we have.

Q: You want to help people and make their experience pleasant and productive, and yet you know that they likely will not experience that.

Exactly. It’s terrible. There have been a few instances where it felt like I was really able to make a difference, but they’re few and far between.

There was this one customer I had, who was completely colorblind. He asked me which shirt out of two looked best on him and seemed to match his clothes, since he couldn’t differentiate between the two of them since they were the same style. After that, I helped him find a matching tie of a close enough shade. That was pretty hard; we didn’t have many anywhere close to that color, but we managed to pull it off. That made him really happy.

I’ve had other customers that have difficulties with wearing particular bras. One lady, I helped her find a bra that didn’t contain any metal and opened from the front instead of the back, because she was having an MRI and a chest operation done. She needed something that wouldn’t be very tight but still provide a decent level of support. Not something I could have easily done, seeing as I can’t even wear them! But we managed to find something in the sports bras that she was satisfied with. I’ve also helped customers come up with innovative costume ideas, when they can’t find something they want in the Halloween section or it’s out of season by putting things together from other departments.

Q: It sounds like some of your most satisfying work experiences have been connecting with customers with disabilities or health issues — people who don’t “fit the mold” — and with getting creative, in general.

Pretty much. I’m one of those customers myself, and very few people “get” that sort of situation. So it makes me feel better to let them know that hey, there are some of us that do get it . . . and we can help out in any way we can.

But yeah, disabilities are a major focal point of my life. Even the tiniest of things winds up revolving around them. They’re always a factor in daily life, so it just comes naturally. And it helps to show people that they’re not alone, especially in an area that is this rural.

Low Pay, Lack of Insurance, Rationing Medication

Q: A big issue for both people with disabilities and for Walmart workers is health care, which is also related to pay. These are central issues in the strikes. A couple of weeks ago, you tweeted this:

i found out that i am indeed eligible for medical care through my employer #walmart, with one problem…

it would take 3/4s of my annual salary just to pay the deductible. not kidding, that’s how little i earn. it’s a $3,000 deductible. #walmart

otherwise, my immediate supervisor and i cracked up constantly about the application, bc it fails to consider how sick ppl like me are.

the options for opting out ranged from being completely healthy & mentally secure, putting money elsewhere [vainly] and already having care

but not once for ‘i can’t afford this shit, i work for you! how would i be able to afford it?!’

one of those instances where even the health reform law doesn’t help me by forcing employers to provide healthcare. too sick, too poor.

maybe if the companies that people like me worked for weren’t such corporate leeches…

Q: Care to elaborate?

Yeah, the health care set up is atrocious. I’ve been “eligible” for it for the past two years – though the associate working in HR [continues to] insist otherwise, quite rudely. I applied for Mainecare under the premise of disability and was denied earlier this month. They claimed that I can still do “light work.” As if being able to work somehow means I don’t need health care, or that my health doesn’t directly impact my ability to work. On our way back to the HR room to deal with the open enrollment, my supervisor and I were commenting on how pointless it is, because most of us are already on Mainecare and that does a better job of covering things and you don’t have to pay for it. Even the healthy people prefer Mainecare over the Walmart insurance.

I don’t know what the system structure is like, though I’ve heard that the places that actually accept the insurance are slim and far between. I wager that most of my current doctors, who I wouldn’t give up – period – wouldn’t accept it even though they accept Mainecare.

But honestly, offering us health care with a deductible that costs nearly as much as our annual wages is ridiculous. If they’re going to offer us health care with that high of a deductible, they need to pay us more to accommodate for it. We barely make enough to eat and keep roofs over our heads, let alone be able to see a doctor.

I make $8.50 an hour. With my number of hours, I make maybe $600-700 a month. That’s enough to pay rent and maybe food, depending on the kind you buy, and never taking dietary needs for IBS [irritable bowel syndrome] or other conditions into consideration. There’s nothing left for medical care.

Q: So you are uninsured right now because you were denied Mainecare?

Correct. Right now I have to pay everything out of pocket. Only reason I’m managing currently is because I have pain meds stashed from a previous remaining refill, before I ran out. Otherwise I have to see my doctor to get a new one. The last time I refilled it, I had to use one of those federal savings programs. The only reason I knew of them is because my fiancé works in pharmacy and told me. It dropped my med price of over $200 to around $47 for that month.

Since then, I’m rationing them.

Q: Do you worry about what will happen if you get a really bad flare and run out? That always terrified me when I was getting too few and too ineffective pain meds. It felt like walking a tightrope.

Absolutely. It’s why I have money stashed in case of emergencies, because I know that it can always happen. I spent a large portion of my life while sick without adequate care or insurance, so I learned the hard way. I’m very lucky that I can live with my parents right now, so I don’t have to pay rent or utility bills, though lately I do have to worry about food.

The refill that I have was for a rather large number of pain meds, 120 of them, and I don’t always need to take them on a daily basis. They’re from my really bad flare in July. So that helps, it’s better than when I had to ration 15 throughout an entire year.

But right now my ribs are out again, and I will likely have to pay out of pocket for [treatment]. It’s affecting my work and means I have to take more meds. I’m not looking forward to winter. And without access to my doctors unless I pay out of pocket, I cannot apply for medical leave until I recover. So like my boss said, if it gets bad and I’m uninsured, I really would have to quit.

Isolation, Rural Location Make Organizing Difficult

Q: Are you involved in the strikes or protests?

I haven’t been able to participate much in things like the strikes or protests, but I’ve still been trying to boost the signals of the cries of others. As far as I am aware, there is nothing organizing in my area. When I searched on the organization websites for any strikes or protests in the area near me, nothing came up. No one seems to talk about it at work at all, either. At least, not that I’ve heard.

Our area is fairly rural in comparison to the larger cities. Not only that, but our largest city is over an hour’s drive away. I commute to work about half an hour as it is.

Q: You mentioned in an email to me feeling isolated by being rural.

Very much so. There’s very little up here in terms of support for just about anything. Just finding out about the fibromyalgia support group that was in the neighboring towns was a big deal. I expected to have to drive hours [to find] one, or be [unable to find one] in general.

So that’s the sort of thing that makes organization really hard for something like the Walmart strikes, especially if you deal with other boundaries due to being disabled. There’s a lot of folks that can’t go much of anywhere because the transportation they have access to will only take them out twice a week [which just covers] grocery shopping. I’m lucky in that I have a car. A lot of people don’t, and if I didn’t, I’d be in poor shape too because the city bus system doesn’t reach out this far.

Q: Let’s talk about the planned strikes and walkouts going on now and later this week. A lot of the issues you’ve brought up are part of the demands made by associates at the OUR Walmart page – wanting respectful treatment from manager, affordable health insurance, living wages, and supporting associates in providing the customer service that Walmart is supposed to be founded upon. What you think of the Declaration for Respect created and circulated by Walmart workers? Did you sign it?

I definitely signed, and I encourage other people to sign. I’ve pushed it on Twitter and among those close to me that know of my struggles with the company, like my fiancé. I would participate in a strike if there were one around here and if it wasn’t such a small area [where] people are more easily identifiable. If someone had started something to talk about it when I was looking for such groups, I probably would have contributed. But I didn’t find anything for Maine. Around here, when it comes to news issues, it frequently feels like things that happen “out there” instead of here. Like such things don’t happen in this state.

But I also support people that can’t strike because they worry about the stability of their jobs, which would be just as much of a concern for me, or stability with their coworkers that may not agree. The latter is especially true around here, when it seems like no one talks about it or when you do bring up the strikes at work, people don’t seem to care. I had to sign [the declaration] anonymously because of how specific my [disability] situation is.

As a passing comment, [I’ve asked] people what they think of it – usually the coworkers in my department that I have a good relationship with, not [relationships] that [are] easily shaken. [I asked] one person, and she seemed rather indifferent to the whole thing. Bringing such things up at work can be really risky. With so many managers, and ones that are continuously walking through the store to keep tabs on things, you have to be careful of what you are talking about, with whom and why. But it also sort of reflects the lack of push-back against our management in general. People will have individual issues with [management], but they won’t organize to talk about it. At least, not here.

Q: It sounds like you think your fellow associates don’t see their individual problems with management as being part of a larger?

Pretty much. Like, a few years ago even I wouldn’t have realized that my issues were part of the overall problem.

Q: How did that change?

Social push-back throughout the country. Hearing about the strikes tipped me off, just as hearing about how frequently such organizations seem to take advantage of or somehow wrong folks with disabilities did. Making myself more aware of social issues.

“Listen to Us, Provide Moral Support”

Q: Final question: What three things would you like everyone who reads this article to do to support Walmart workers like you?

Signing the petition is a big step, since it’ll show that we’re not just people whining about things, that others support us and understand that our needs are legit and a part of basic human rights.

If someone you know works for Walmart and they talk or complain about something that happened that reflects on such issues, or mistreatment toward them, listen to them. Let them know that you’re listening, and provide them moral support.

If you can, spread the word – don’t let this fall into isolation, because if it does, change will never happen. Companies like this are stubborn and need to be really shaken for them to get the picture. They need to be held accountable, and the only way we can do that is by making the most noise we possibly can.

Q: Those are three very clear, very easy, doable requests**. I noticed you didn’t mention the strike and boycott? Do you think there’s any chance of that happening in your area?

I’d love it if they boycotted, and I would [boycott, too] if it weren’t for the fact that it’s one of the cheapest stores around here and they only pay me enough to buy their products! The chances of [a boycott] happening though are pretty slim. I certainly get enough calls about when Black Friday or the deals start to suggest that [people are not going to boycott].

Q: Well, here’s to hoping!

Definitely!

Q: Thank you so much for your time! This was fun, and I learned a lot.

You too. Thank you very much for giving me the chance to speak out about this.

*Static Nonsense is an avatar – the name that the person I interviewed uses online.

This is a modified version of the post that originally appeared at After Gadget.

Imagine this situation: A woman arrives at a hospital for a medical procedure. She is obviously sick, in pain, and severely disabled. She’s in a wheelchair and on oxygen. She needs help getting from her car to her wheelchair, and going to the bathroom, and changing into her gown. Whenever she’s moved, she grimaces, her hands and feet curled in pain. It looks and sounds like talking and even breathing are an effort. In fact, her disease has rendered her incoherent, so the person with her translates her gestures and sounds to the nurses. The patient is asking for a legal document before the procedure — a form.

The nurse immediately understands. “I know what you want,” she says and returns quickly with the paperwork. She explains that these are advance directive forms that the patient can fill out to decline life-saving treatment. The patient says no, she just wanted to update the contact information on her health care proxy forms, which the hospital keeps on file. In fact, the reason she is certain to keep her health care proxy forms updated is that she does want extreme measures. No matter how grim her situation appears from the outside, she wants her friends to advocate for her right and desire to live.

Of course, this is not hypothetical. The woman is me. That incident happened a few years ago. At the time, I was too stunned to take in the meaning of what happened.

It was only later that I realized that the nurse had, in effect, offered me a DNR (do not resuscitate) form without my asking, that she had basically asked me if I wanted to die. It’s possible she offers those forms to everyone, but I think it’s more likely that my appearance — the fact that I was visibly severely disabled — led the nurse to the conclusion that I didn’t consider my life worth fighting for.

That story is part of my very personal reason for opposing ballot question 2: I know the “slippery slope” referred to below is not a hypothetical for the future. Some people have already slid down it. Some people have already been pushed. I learned that day that I had to hold onto my breaks even tighter than I thought I did because I was already on the slope.

This is an issue where many of the most vulnerable 99 percent find ourselves not being heard by others we would like to be our allies.Most liberals tend to be in favor of assisted suicide, but they are often not acquainted with the disability rights perspective on this issue. I think this quote by Carol Gill — from her excellent article on strawman arguments used against disability rights perspectives — really sums it up:

Diane Coleman has characterized the leading proponents of legalized assisted suicide as “white, well-off, worried, and well.” They have enjoyed a good deal of control, know exactly what they have to lose, and are determined to retain it until death. Unfortunately, viewing the world from a position of privilege may limit one’s insight into the consequences of a policy change whose greatest impact could fall on socially marginalized groups.

The issue of pain relief is not actually at the center of the issue. The fact is that the majority of people who use doctor-assisted suicide do not give pain as their primary reason for wanting to die.

They list issues like being a “burden” and not wanting to lose certain physical functions — not wanting to be disabled, in other words.

When disabled people have sufficient personal assistance services in our homes, we do not need to worry about “burdening” family members with care. We can hire, train, and fire our own assistants in the comfort and dignity of our own homes. This is a social issue — a social justice issue — not a medical issue. I know this from painful experience.

I have had friends and members of my community kill themselves, including two who went to Jack Kevorkian. Neither of them were terminally ill, which was the case for most of Kevorkian’s victims. They had chronic illnesses like mine, which were not taken seriously. One, a woman, primarily did it because she didn’t want to be a “burden” to her husband and because nobody believed she was really sick, that her physical illness was real. This is a social problem, not a medical one. It has to do with the way people with disabilities and chronic illness are treated in this culture, and giving us the “solution” of offing ourselves is a pretty chilling form of providing a social solution.

The other, a man, went to Kevorkian primarily because he was ground down by poverty and by not getting decent pain management. Again, this was because doctors didn’t believe he was really sick. He was not terminal. He was tired of being treated like his life didn’t matter, and eventually he obviously came to that conclusion himself. I was particularly shaken by his death because, as I said to a mutual friend of ours when I heard the news, “But he was so resourceful.” I couldn’t imagine him — who so often gave info and referral to others with disabilities in poverty looking for ways to get by — giving up. My friend said, and I think she hit the nail on the head, “I think sometimes people are most resourceful because they are so desperate.” Again, Bill chose “assisted suicide” not because of a medical condition, but because of societal abuse/neglect.

Diane Coleman said it best in the New York Times,“It’s the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live.”

Furthermore, members of the #Occupy movement MUST be aware of how corporations and money have and will affect how assisted suicide laws are used.

The more laws that are passed that give managed care companies the option of paying for a suicide pill instead of paying for chronic pain management, the more people with chronic pain or life-threatening illness will be offered a cheap suicide rather than an “expensive” livable option. You only need look at how Lyme disease treatment has gone in the US know how this happens.

But there are a lot more reasons to vote against Question 2. The fact is that even if you support the idea of assisted suicide for dying people — the right of someone who is actively dying, who is in pain at the end of their life and wants a way to hasten death by just a few days — you should still oppose this ballot initiative because it is full of gaps and loopholes and opportunities for abuse. It is, quite simply, a bad bill, a bill that ought to spur you towards Second Thoughts:

Question 2 is modeled in the laws in Oregon and Washington — laws which have led to documented cases of abuse, discrimination, and pressures to choose suicide over medical treatment based on cost considerations. For example, from an article by John Kelly in Disability Issues: “Disabled people constantly hear how expensive we are, how money could be better spent elsewhere. In Oregon, Barbara Wagner and Randy Stroup received letters from Oregon Medicaid denying them chemotherapy for their cancer.The letters did inform them, however, that the state would cover the $100 cost of assisted suicide. Because assisted suicide will always be the cheapest treatment, its availability will inevitably affect medical decision-making. In a system constantly under pressure to cut costs, choice will be constrained.” (More on this topic in this excellent article, PDF, by Carol Gill.)

Elders and people with disabilities are at greater risk for abuse than the general public, and they are also the people most affected by this bill. The rate for elder abuse in Massachusetts is estimated at one in 10 already, with the vast majority of abusers being caretakers — family, heirs, and providers of medical and personal care — the same people in a position to help someone obtain and ingest the poison pill.

Risk for abuse is inherent in the law: According to the Cambridge Commission for Person’s with Disabilities, “Under this initiative, an heir could be a witness and help someone sign up for assisted suicide despite a potential conflict of interest. Once a lethal drug is in the home, there is no requirement for professional oversight to monitor how that drug is administered.“

The National Council on Disability (NCD) Position Paper on Assisted Suicide states that: “The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed health care and limitations upon health care resources precipitate increased ‘rationing’ of health care services and health care financing. . . . The so-called ‘slippery slope’ already operates in regard to individuals with disabilities. . . . If assisted suicide were to be legalized, the most dire ramifications for people with disabilities would ensue unless stringent procedural prerequisites were established to prevent its misuse, abuse, improper application, and creeping expansion.”

Inexact wording and application. Anyone who a doctor says has six months or less to live can be given fatal drugs, but doctors are fallible, medical conditions are diverse, unique, and complex — it is not easy to determine how long someone will live. Many people outlive their prognoses for months or years. Some even recover. (I know someone who was terminally ill 15 years ago, and she’s still writing and publishing books today!) It is also a fact that wherever assisted suicide is legal — whether in Oregon or the Netherlands — the definition of who is eligible becomes broader and broader. It is not confined to people who are imminently dying, but also to people who are not terminally ill, particularly people with disabilities, chronic illness, or elderly people.

Inattention to mental health issues. According to Second Thoughts member, John Kelly, “In 2011, exactly 1 out of 71 Oregonians seeking assisted suicide were referred for psychiatric evaluation. With the total 14-year referral rate below 7%, people are not being adequately evaluated. Michael Freeland, who had a 43-year history of depression and suicide attempts, easily got a lethal prescription, and it was only because he mistakenly called an opposition group that he was spared suicide. He also outlived his terminal diagnosis.”

One of the key reasons that disability rights activists oppose such laws is that the focus of the laws, and the way they are carried out, are not really about providing more comfort in the last hours of a life that is already fading. It is about fears and lack of understanding about what it means to be disabled or ill — a state that many of us spend our entire lives in, often quite happily. Quoting Kelly again: “That word ‘dignity’ in the act title signals that assisted suicide is not about preventing pain and suffering during the actual dying process, but about escaping the perceived quality-of-life beforehand. People’s concerns listed by prescribing doctors are almost exclusively social: people seek assisted suicide because of limitations on activities, incontinence,feeling like a burden, and perceived loss of dignity. We disabled people know that our dignity does not depend on performing our own self-care or being continent every hour of every day. We know that there are social supports such as home care and PCAs that can remove any family burden, and we understand that our dignity is just fine thank you, without having to die to get it.”

Pennsylvania Cuts Reflect National Issues

Police Brutality, 83 Arrests in Struggle to Save Medicaid in the Keystone State

by Sharon Wachsler, October 16, 2012

As we posted yesterday, disability rights activists from around the country have converged on Harrisburg, Pennsylvania to convince lawmakers to change course on the devastating cuts to Medicaid that are harming people with disabilities.

The protests and efforts to affect change started on Sunday and continue through Thursday (October 18). Today’s activism saw 83 arrests and police brutality that was captured on video (see below).

Yesterday, Governor Corbett refused to meet with ADAPT, though activists attempted to make headway with other key lawmakers, including Senator Jack Corman and Representative William Adolph, but nothing that led to concrete action or meaningful meetings.

Pennsylvania was in the process of “rebalancing” its system to more effectively support seniors and people with disabilities living in the community rather than relying on institutional placement. The state had also become a national leader in allowing people with disabilities to manage their own assistance and utilizing Centers for Independent Living in the provision of home and community based services. The Corbett administration has destroyed much of this progress by cutting funding for Pennsylvania’s Medicaid home and community based services and implementing sweeping changes to the state’s infrastructure for providing home and community based long term services and supports. …

ADAPT believes the choice should be clear because the US Supreme Court has determined, in the Olmstead decision, that under the Americans with Disabilities Act people with disabilities have a fundamental civil right to receive community based services and supports from Medicaid as an alternative to being forced into a nursing facility or institution. Furthermore, there is federal funding to make these important changes.

Video description: Harrisburg Police Assault ADAPT Members at the Department of Public Welfare building on October 16, 2012. A four-minute video of many people, most in wheelchairs, at least one blind man standing up, and many male police officers in an enclosed indoor space. There are glass doors that the police seem to be trying to close or pull people through. You can see an unidentified woman get pulled by her pony-tail over a wheelchair and onto the floor, and there is screaming, and then police remove the hat of Joey Tate and also pull him in through the doors by his hair as ADAPT members shout over and over “Nonviolent!” and “No violence!”

When I see these actions coming across my Twitter feed, I wonder, “Where is Occupy in this?” People with disabilities on Medicaid, facing institutionalization are in the bottom of the 99 percent. I heard that Occupy Harrisburg was there with ADAPT today. I would love to learn that lots of the rest of the #OWS is heading to Harrisburg right now, or at the very least calling, tweeting, and making noise about cuts to Medicaid! Will YOU join in?

What You Can Do to Help

Options for Those In PA and Elsewhere to Make a Difference

For those out of state and CAN’T get there in person, here are the most useful actions you can take to make a difference:

Follow National ADAPT and PA ADAPT on their web pages, Facebook, and Twitter. Share their tweets, status updates, pictures, and videos! Ask others to get involved and spread the word, make phone calls (see below), and lend support in person, if possible. (PA ADAPT on FB and PA ADAPT on Twitter.)

If you can make telephone calls, call Pennsylvania Governor Tom Corbett and tell him to work with Pennsylvania ADAPT to implement Community First Choice. Call him at 717-787-2500 (voice). You can also call Dept. of Welfare Secretary Gary Alexander at 717-787-2600 and tell him to meet with ADAPT.

Savannah Nicole Logsdon-Breakstone, a member of Occupy Pittsburgh and a supporter of PA ADAPT who is not normally able to get transportation to ADAPT events suggests some creative ways of bringing attention to the issue: “Share the messages that National ADAPT have been tweeting/sharing. If you can call, call the numbers they list. Take photos holding signs of solidarity, and make videos about why Medicaid is important — why it matters in your life. When you share photos/videos, tag National ADAPT and PA ADAPT and write what state you are posting from.”

If you CAN make it to Harrisburg tomorrow (October 17) or Thursday (October 18), that is very helpful!

You do not have to have experience as an ADAPT protester! Everyone is welcome to help! Here are some ways to be useful:

Show up! Especially if you can come before or during the rally tomorrow. MY MEDICAID MATTERS Rally, scheduled for October 17th, 2012 , Capitol Building, Fountain Entrance, 1:00 pm, rain or shine. If there is inclement weather, we will be meeting inside at the Main Rotunda at 1:00 pm.

Auer says, “For the next two days, being there, being another voice, a body” matters.

“If you’re near the train/bus station (Amtrak/Greyhound), directing people how to get to the Capitol is very helpful. Direct them to the Fountain side (the Commonwealth side) because there will be a rally at the fountain.” (See below.)

The weather has been cold and the days have been long. If you can bring warm gear (blankets, sleeping bags, etc.), hot food and drinks, that will also be helpful. As always, brings signs, bring your stories, your passion. Be ready to listen to instructions from ADAPT leaders. Bring your phone, camera, video cam to document what happens and to spread the word.

Please spread the word and get there if you can!

Why should you come to Harrisburg? This legislative session may fundamentally change “Medicaid As We Know It” in ways that we won’t like unless we tell them what we want in any reforms they propose. NOTHING ABOUT US WITHOUT US! We are beginning to see people returning to institutions. We continue to watch the dismantling of one of the country’s best attendant care waivers and the destruction of small, effective community providers. Community Mental Health services are disappearing, and the future of these services are in jeopardy, becoming almost non-existent. When Medicaid is reformed, we better be at that table.

ADAPT spells out ten demands. Governor Corbett’s administration must develop an Olmstead plan which does the following (further details on each item are on the ADAPT website):

Engages ADAPT, the state’s extensive network of Centers for Independent Living, other disability-led advocacy organizations and legal advocates in the development and monitoring of the plan and its individual components

Shifts Medicaid funding for long term services and supports so that at least fifty percent of those funds support home and community-based services by 2015

Selects and implements the Community First Choice Option

Establishes specific benchmarks and regularly provides public reporting on the state’s progress in achieving these benchmarks

Assures that people with the most significant disabilities receive the services and supports they need to lead an independent and integrated life in the community

Changes state rules to allow attendants to perform health maintenance tasks for people who need them as a long term service or support so that individuals who need this assistance can live independently in the community

Leverages the state’s network of Centers for Independent Living and other non-profit disability-led providers committed to the independence and integration of people with disabilities

Establishes Medicaid rates that support a living wage for attendants and sustains the community-based organizations that assist people in living independently

Restores the funding systems that local counties use to support mental health and developmental disability programs

Establishes leadership within the state who truly supports home and community based services as an alternative to institutionalization.

What else can you do to help? Share this article! And comment here and on Twitter about why #MyMedicaidMatters to you!

Note: It’s taken several weeks to write this post, so the case has progressed since I started writing.

There are several factors that contributed to the death of 17-year-old Florida high-school student Trayvon Martin. The most obvious are racism and a gun. A less obvious one is Florida’s “Stand Your Ground Law.”

Let’s start with the obvious factors. If Zimmerman hadn’t acted on assumptions that Martin was “up to no good,” based solely on the teenager’s appearance, Martin would not be dead. Based on my reading about what happened and my hearing the words Zimmerman used on the 911 calls — especially in the context of gun violence against young Black men — the only interpretation that makes sense to me is that Zimmerman was acting on the idea that young, Black men are criminals. Whether or not he “is a racist” or is white is immaterial; anyone can act on racist thoughts and impulses.

It’s also simple logic that if Zimmerman had not had a gun, he couldn’t have shot Martin. You can’t shoot someone to death without a gun, period. Can you imagine a scenario where Zimmerman chased down someone he perceived as a threat or “suspicious” and wrestled him to the ground with his bare hands (or even a knife) and then killed him that way, up close and personal, and claimed it was self defense? That is not what happens in situations where innocent people are killed in cases of “self defense.” They are shot from a distance, where communication if often difficult, if not impossible.

So, given that racism pervades our culture in the US,* and given that many people have guns,* what can we do — in addition to fighting racism and fighting easy access to guns — to stop these tragedies? What can we do to help the survivors get heard and get justice — whether that means ability to sue for wrongful death or jail time for the killer?

You can march, if you’re able. You can sign petitions. You can spread the word about it. You can organize events. You can talk to your elected official. You can run for office, yourself.

I can do some of those things, and not others. Probably the same is true for you. What I can do has felt so small. It’s easy to become numbed by helpless rage or sorrow by such tragedies, especially because of their frequency. It’s easy to feel overwhelmed. And especially if you cannot take action in more visible ways, it can feel like you don’t make much of a difference. Sometimes I wonder, “How can I, who rarely leaves bed and even more rarely leaves my home, make a difference?” Well, I have found one thing I can do, in addition to signing petitions and tweeting. You can do it, too, and I hope you will: Prevent a Stand Your Ground Law from being passed in your state. It’s much easier to prevent a new law from getting enacted than repealing an existing one. (Though if your state already has one, I hope you will try to get it repealed.)

As I will explain below, these laws are also interrelated with the issues of racism and gun proliferation.

One of the issues that has upset many people the most is the lack of police response to the murder. Obviously, racism and racial profiling are a central reason. Who can conceive of a 17-year-old white boy being shot to death and not having his killer, at the very least, detained and questioned and considered a suspect for a serious crime? If a Black man had shot a white teenager, would any police station in the country have let the shooter sleep at home that night? Anti-racism work, anti-gun legislation, anti-profiling legislation are crucial, and there is more we can do.

I’m not a lawyer or legal scholar, but I know a little about self-defense laws because I’m a former self-defense teacher. I taught my students two things:

1. How to prevent being assaulted — often involving de-escalation or verbal self-defense*** — and

2. How to use deadly force if they couldn’t get to safety without it.

I taught my students to fight until they knocked an assailant unconscious, just so they’d know how to do it if that was their only option. That level of self-defense is deadly force. Kicking somebody with a shod foot is actually considered using a weapon. I taught my students how to defend themselves against multiple types of physical and sexual assault, and to get their assailant on the ground and axe-kick them in the head. This not gentle stuff! That could kill someone and at the least would likely cause brain injury. So, I had to learn about self-defense laws in order to be able to tell my students what their legal rights and responsibilities were.

While the definitions vary from state to state, the general rule makes an important distinction between the use of non-deadly and deadly force. A person may use non-deadly force to prevent imminent injury, however a person may not use deadly force unless that person is in reasonable fear of serious injury or death. Some states also include a duty to retreat(exceptions include Louisiana and Florida), when deadly force may only be used if the person is unable to safely retreat. A person is generally not obligated to retreat if in one’s own home in what has been called the castle exception (from the expression “A man’s home is his castle”).

I highlighted the parenthetical phrase, “exceptions include Louisiana and Florida,” because this is a reference to Stand Your Ground Laws in those states. However, many more states also now have these laws. I’ve had trouble finding the correct number because it has risen so sharply and so fast. Gun lobbyists have pushed legislation in all US states, modeled after Florida’s law, to create Stand Your Ground Laws.

Why will Stand Your Ground Laws result in more deaths of innocent people and not help protect people in dangerous situations?

First of all, more-than-adequate self-defense laws already exist. Massachusetts — and most other states — already have a “Castle Law” or uphold Castle doctrine (meaning that legal precedents set in court will amount to the same outcome as having the law.) A Castle Law says that if someone is illegally in your home or is committing a crime in your home, the resident may defend themselves or others against the assailant, including using deadly force, with no “duty to retreat.” In other words, if you’re in your home, and someone breaks in, you can legally kill them, even if you could have escaped harm by, for instance, locking yourself in the bathroom, calling 911, and yelling your head off. Here is Massachusetts’ Castle Law, for example:

Section 8A. In the prosecution of a person who is an occupant of a dwelling charged with killing or injuring one who was unlawfully in said dwelling, it shall be a defense that the occupant was in his dwelling at the time of the offense and that he acted in the reasonable belief that the person unlawfully in said dwelling was about to inflict great bodily injury or death upon said occupant or upon another person lawfully in said dwelling, and that said occupant used reasonable means to defend himself or such other person lawfully in said dwelling. There shall be no duty on said occupant to retreat from such person unlawfully in said dwelling. [Emphasis added]

Part 1: It shall be an act of lawful defense if a person, who is an occupant of a dwelling or in any place that they have a right to be, used deadly force, or less than deadly force, if he or she acted in the reasonable belief that an assailant was about to inflict great bodily injury or death upon themselves or upon another person who also had a right to be in the location. There shall be no duty on a person to retreat from any place that they have a right to be. An act of lawful defense as outlined in this section shall not be cause for arrest or prosecution. Further, an act of lawful defense under this section shall not be cause for the revocation of a license issued under 10 sections, 122, 123, 129B or 131 of Chapter 140. [Emphasis added.]

Part 2: No person who has committed an act of lawful defense as outlined in section 8A of chapter 278 shall be held liable in an action for damages for death or injuries to an assailant. [Emphasis added.]

The proposed law might appear similar to the existing law, but there are several crucial differences. I’ll start with part one. One of the most problematic sentences in this part of the bill is this: “There shall be no duty on a person to retreat from any place that they have a right to be.” The two most troublesome aspects are “no duty to retreat” and “any place they have a right to be.”

First, let’s talk about “any place they have a right to be.” Well, where is that? In Castle Doctrine, the right to use lethal force without a duty to retreat is restricted to your home. In Stand Your Ground Laws, you can use lethal force anywhere you have a right to be, which means pretty much anywhere! You have a right to be in the street, in a store, on a sidewalk, in a restaurant, in a hotel, at a school or a playground, etc. Unless you’re trespassing, you have a right to be anywhere. And, in a public place, the person you perceive as an assailant would also have a right to be there. Further, in a public place, innocent bystanders could be harmed or killed if they are shot while someone is “standing their ground” under this law, too.

Then there is “no duty retreat.” This means that even if you could easily or reasonably escape harm by not fighting — by moving yourself and/or another person at risk to a safe location — or by defending yourself using less-than-lethal force (which, in the great majority of assault cases, is enough to stop an assault), you can legally choose not to take less lethal measures and just kill the person instead.

To sum up, you can kill someone and not be prosecuted if you have a fear for your safety anywhere, even if
1. that person also has the right to be there, and
2. you would be able to escape harm by running, by going into a different building, by using non-lethal force, by calling the police, etc.

What does vigilantism look like? It looks like George Zimmerman pursuing Trayvon Martin on the street — a place they both had “a right to be” — and shooting to death an unarmed boy because he perceived Martin to be a threat. If legal precedent holds, Zimmerman will not be punished for this crime.

Which precedents are these? One example is that of the 16-year-old Japanese exchange student, Yoshihiro Hattori. Hattori was with his host brother looking for a Halloween party. They got lost and rang the doorbell of the wrong house in Baton Rouge. The wife in that house panicked that a stranger was outside (a stranger wearing a tuxedo who had rung her doorbell) and told her husband to get his gun. He did, and even though the boys had already turned around and were heading back to their car, and they called out that they were looking for the Halloween party, from his doorway the gun owner yelled, “Freeze!” Hattori, who was not fluent in English and didn’t know what “freeze” meant, took a step forward and was shot to death.

Some may think that the nationwide outrage over Trayvon Martin’s death will lead to a murder conviction for Zimmerman. I’m not so sure. Yoshihiro Hattori’s case became an international incident that seriously affected tourism in the US, yet Hattori’s murderer received no jail time for killing the boy. Why? Because the defense successfully used Louisiana’s Stand Your Ground Law.

In my opinion, what is much worse than the lack of jail time for the killers is the lack of other forms of legal recourse for those injured or for the families of those killed. It is very unlikely that if Zimmerman successfully defends his actions using Florida’s Stand Your Ground Law that Martin’s family would be able to sue for wrongful death in civil court. Why? Because these laws also prevent that. The wording in the second part of Mass. bill 661 would prevent such lawsuits:

No person who has committed an act of lawful defense as outlined in section 8A of chapter 278 shall be held liable in an action for damages for death or injuries to an assailant.

In the seven years since it was enacted, the Florida law and others like it have become an effective defense for an increasing number of people who have shot others, according to state records and media reports.

Justifiable homicides in Florida have tripled, according to Florida Department of Law Enforcement data. Other states have seen similar increases, FBI statistics show.

In the five years before the law’s passage, Florida prosecutors declared “justifiable” an average of 12 killings by private citizens each year. . . . But in the five years after the law passed, that number spiked to an average of 36 justifiable killings per year.

So, why are these terrible laws spreading like wildfire? A big hint can be found in the last sentence of Massachusetts’ proposed law:

Further, an act of lawful defense under this section shall not be cause for the revocation of a license issued under 10 sections, 122, 123, 129B or 131 of Chapter 140.

What are the licenses that can’t be revoked? All the laws referred to in that sentence are laws governing the right to sell, rent, buy, or lease guns (“firearms, rifles, or shotguns”). In other words, if you kill someone under this law — even if you make a mistake and kill someone who was not actually harming you — you get to keep your gun, and the person who sold you that gun gets to keep their seller’s permit. It’s no surprise, then, that the NRA is behind the push for these laws in every state of the Union:

This sharp turn in American law . . . began in Florida in 2005 and has spread to more than 30 other states as a result of a campaign by the National Rifle Association and a corporate-backed group called the American Legislative Exchange Council (ALEC), which promotes conservative bills.

Florida has been at the forefront of expanding gun rights for decades, ever since an NRA lobbyist named Marion Hammer, the NRA’s first female president, became a force in the state capitol in Tallahassee.

When she helped write the Stand Your Ground bill and circulated it, some police chiefs and other law enforcement officials warned that the measure would make it hard to convict people of murder. Defendants would simply claim self-defense and challenge prosecutors to prove they were lying.

And this is what has happened. Hattori and Martin are not the only people who have been shot, and their shooters not imprisoned, based on these types of laws. In Florida, Billy Kuch was also looking for a party and went to wrong house. He was on gun owner Gregory Stewart’s lawn, with a cigarette in one hand and a T-shirt in the other, asking for a light, when Stewart shot him in the chest. Kuch was not armed. He was not attacking. Kuch survived but suffered physical injury as well as PTSD and worsened bipolar disorder since the assault. Stewart was not prosecuted because of the Stand Your Ground Law.

What can you do to make a difference? To roll back the tide of this deadly legislation?

Another very important step is to personally call your representative and senator in your state legislature and tell them why you oppose this bill. Petitions are useful, but personal contact is better. Talk about Trayvon Martin. Talk about your own thoughts and feelings. Let them know that you are paying attention.

Then, equally important, share the petition link and the link to this article with your friends, family, activist networks, and others. These bills are quietly becoming laws in one state after another without public awareness of the ramifications. We must shine a light on gun lobbyists’ activities that can lead to more murders.

What underlies these bills is fear — literally and figuratively.

I wrote near the beginning of this post that this legislation relates to guns and racism. I hope by now the gun connection is obvious. The connection with racism is fear. What underlies innocent people being shot or killed is fear of the “other.” Fears based on racism are by definition irrational. Yet, these laws require people with guns to make decisions about whether to shoot based on “reasonable fear.” This makes no sense.

A person is presumed to have held a reasonable fear of imminent peril of death or great bodily harm to himself or herself or another when using defensive force that is intended or likely to cause death or great bodily harm to another if…. [Emphasis added.]

The word “fear” is prominent in this law. That is not the case in all self-defense laws. For example, the Mass. Castle Law refers to “a reasonable belief that the person unlawfully in said dwelling was about to inflict great bodily injury or death upon said occupant or upon another person lawfully in said dwelling, and that said occupant used reasonable means to defend himself.”

This might seem like semantic game-playing, but every word of a law is important. In a trial where a defendant has killed someone and says it was self defense, it is much easier for the defense to successfully argue that they were afraid — after all, the emotions we experience are personal and subjective — than to argue that their belief of imminent great bodily injury was reasonable. One can argue whether a belief is reasonable. One cannot argue that another was feeling fear, whether or not their fear was rational.

Likewise, using “reasonable means” to defend oneself does not mean using any available means; it means doing what you reasonably can to protect your (or another’s) life or safety.

In the aftermath of the 2001 terrorist attacks and amid images of lawlessness in New Orleans after Hurricane Katrina, many Floridians, and Americans generally, felt less safe and believed the justice system could not protect victims, said a study of Stand Your Ground laws by the National District Attorneys Association.

In Florida, where looters appeared in the wake of Hurricane Ivan in 2004, [NRA lobbyist Marion] Hammer launched her drive for the new law based on the case of James Workman, a 77-year-old Pensacola man who fatally shot an intruder who entered the trailer Workman was living in after the storm damaged his house.

Prosecutors decided not to charge Workman, but many lawmakers pronounced themselves appalled that he had to endure months of uncertainty before being cleared.

The Katrina disaster and the responses to hurricanes after it were highly racialized. Discussion and perception of “looting” by the media and general public in the aftermath of hurricanes, especially Katrina, was highly racialized. White people who went into stores or homes to get things were scavenging “provisions,” whereas Black people doing the same thing were “looting.” The specter of fear was writ large. Even as people of color were depicted as scary and criminal, they were dying. I’d never seen the double-edged sword of racism on such a large scale in my life before: the utter lack of support, help, or safety for people who were at the same time portrayed as the threat.

That Florida’s law grows out of this history, and that the Florida law has been used as the basis for all the other laws the NRA is pushing is deeply disturbing.

There are certain groups of people who are more likely to be assaulted by others, to need self defense, and certain groups of people who are more likely to be misperceived as a threat. Often, these groups overlap. In other words, people who are at higher risk of being assaulted and needing to defend themselves are instead the ones who are perceived as threats and shot.

Some of the people who are most likely to be abused or assaulted (by civilians) are children, women, queer people, trans people, disabled people (which includes physical, intellectual, sensory, and psychiatric disabilities), people of color, and elderly people. However, you will be hard-pressed to find multiple stories of civilians in these groups who shoot someone to death in the mistaken belief that they are protecting themselves. Most often when someone in these categories is abused or assaulted, their perpetrators continue to abuse and assault them or others. So far, the people I have read about who are getting away with murder under Stand Your Ground Laws are not elderly, disabled, female, queer, trans, or children.

So, why are people who are not in high-risk groups — not likely to be assaulted — killing people they mistakenly believe are dangerous? There are some similarities in some of these cases. Both Yoshihiro Hattori and Trayvon Martin were young men of color. Both were at a distance from their killers. Neither were attacking or pursuing their killers. So far, both their killers have gotten away with murder.

In both cases, it seems very likely that the killers had an unreasonable fear of a young man of color near their homes because men of color are feared in our society. Regardless of who they are, what they are wearing, what they are doing, they risk being perceived as criminals, as threats. A Black Harvard professor gets arrested for going into his own home. A Black New York City councilor gets arrested by police. These types of incidents happen every day. Cases of unarmed dark-skinned men being shot by police and civilians are such a common occurrence that we have terms like “driving while Black (DWB)” or even “walking while Black” as shorthand. Black men have passed down a “code” to their sons to try to teach them to protect themselves from being perceived as a threat and harmed as a result.

It is not possible in this culture to never have racist thoughts, no matter what your skin tone or politics. I try to work against racism, yet I still have racist thoughts that just pop into my head before I have a chance to examine them. People of color have racist thoughts. We all do. Fear of dark-skinned men is part of our culture — whether it is conscious or not. Because this fear is present, it’s especially dangerous to have laws encouraging people to shoot people they fear!

Another group of people who are feared by the general public, but who are actually at a higher risk for assault are people with mental illness. Billy Kuch was one such person. Another was David Gatti of Massachusetts, who was shot dead by Ronald Duval in Duval’s home. This case is a bit different from previous ones I’ve mentioned above: Gatti was armed — with a broken glass — and was inside Duval’s home. Duval did shoot Gatti in the leg before shooting him fatally in the chest. Duval was not prosecuted because of Massachusetts’ Castle Law.

The United States already has an astronomical murder rate. These laws will cause more murders, and very likely, those killed will be people already at high risk for violent death, people with mental health diagnoses and particularly young, Black men. Given that the leading cause of death for African-American males ages 15 to 34 is murder, we need to work harder to protect this group from victimization, not add to it.

Does your state have a Stand Your Ground Law already? Does it have a bill in your legislature? I’ve compiled a list.

HOW YOU CAN HELP

There are several things you can do to make a difference. Most are very easy and fast. The more you can do, the better. Any step you take will help!

If you live in a state that doesn’t yet have a Stand Your Ground Law (see list here), now is the time to personally contact your representative and senator for your state legislature and tell them you strongly oppose such a law. It is extremely likely that such a bill is already in your state legislature! If you don’t know who they are, just google your state’s name + legislature, e.g., “Minnesota legislature” or “Virginia legislature,” and then you can usually search by your zip code.

If you live in a state that already has a SYG law (see list), you have options to make a change. Talk to your legislators, community activists, religious leaders, or others who are sympathetic to the cause. You can launch a statewide ballot initiative or work with a legislator to get a bill introduced that would amend your current law.

Whether you consider yourself part of the Occupy movement or not, most people want laws decided by the people, not by corporations or lobbyists like the NRA and ALEC. Rolling back these laws is an act of self defense by and for the people, especially some of the most vulnerable people in our society.

Footnotes

*Comments arguing against the fact of pervasive racism in US society will not be approved. Comments arguing against the fact that legal gun ownership leads to the death of scores of innocent people will not be approved.

**Because of the recent push for Stand Your Ground Laws in every state, the number of states with this law is now higher than 17, but I haven’t been able to figure out exactly which states have the law and which don’t. I believe 25 states current have this law, and several others have bills.

***Studies have shown that the most effective technique in preventing a rape is to fight back verbally. If that doesn’t work, fighting back physically is also usually effective.

While activists and citizen journalists are physically organizing and occupying in the trenches, from Oscar Grant Plaza to Liberty Square and all over the world, they’re also sharing their experiences and observations with the world. The 99% includes many people from the outskirts of the trenches to far beyond the trenches. How lucky are we to have technology to bring us together? Never before in history has it been possible for a person to watch history in the making from 3000 (or more) miles away, live as it happens. Some of us watching the action are doing so because we cannot physically Occupy. While there are many reasons someone might not be able to physically join marches and GAs (caring for family, conflicting work or other schedules, lack of transportation, lack of money, geographical location), some of us have physical or emotional challenges that keep us away. (Some of us have all types of challenges.) We’re the Occupiers with disabilities (OWD).

Disabilities that might prevent someone from being physically present at Occupy actions are diverse. Mobility, hearing, and vision impairments are some obvious ones, but able-bodied Occupiers might not realize some OWD are so sensitive to chemicals and irritants that they cannot risk exposure to violent tear gas attacks, let alone the peaceful burning of sage or tobacco, or a fellow Occupier’s scented toiletries. Some OWD may have extreme social anxiety, depression, agoraphobia, or PTSD, and a large Occupy event is well beyond their personal safety or comfort zone. Some OWD may be able to walk or stand unassisted, but only for short distances or periods of time. Some OWD cannot leave their beds for more than a few minutes at a time. Some OWD immunologically compromised and cannot risk even the sniffles from a fellow occupier. Far too often, we hear “But you don’t LOOK sick!” There are plenty of Occupiers on the front lines right now who are doing so with disabilities, too.

People with disabilities often have to fight harder for basic survival needs than those who are currently able-bodied. A simple trip to the supermarket might be exhausting or extremely painful, so a quick to the store for an able-bodied person might take considerably longer for someone with a mobility impairment, or might require a long nap (or even longer recovery period) for someone with chronic fatigue syndrome. A wheelchair user might be able to get around without discomfort, but if an action is not wheelchair accessible (or that accessibility isn’t obvious ahead of time), that OWD won’t be able to participate. For motorized chair users, they need to factor in how far they can travel before needing to recharge. While some OWD may be able to physically traverse the terrain of a march or other action, they might not be able to afford themselves the “luxury” of the long recovery period, particularly if they have other obligations.

What would we do without the internet? I think Occupy has gained momentum as quickly as it has because of it; there’s been no time before in history where it’s been so easy to disseminate information of all kinds this quickly. From a tiny computer in the palm of one occupier’s hand at Occupy DC, their experiences are accessible by (almost) anyone in the (first) world. The information is archived, but it’s also broadcast to networks upon networks of people in real time. We repost and repeat, we have conversations about the movement within our own circles as well as random strangers. The mainstream media has failed us, but we clearly don’t need them.

Live streams in particular have been an amazing tool for OWD all over the world. Many of us are watching on the edge of our seats, as when the Oakland Police Department attacked peaceful protesters, when NYPD did the same, and every other time our civil liberties are threatened since September. Americans can see what’s going on beyond the country’s borders, and vice versa. We cheer and join in the chanting and excitement when there are solidarity marches and other peaceful assemblies from our chairs and beds. Not only are we active viewers, but we’re actively participating beyond where the action is happening. We’re sharing live stream links with our own networks, responding in real time. We’re telling the world about these activities, we’re researching, archiving, propagating information. We’re helping others become more informed both within and well beyond Occupy sites. We repost, repeat, and retweet officer names and badge numbers when occupiers are mistreated. We repost, repeat, and retweet your blogs, pictures, videos, and tweets. We comment, sign petitions, and participate in online forums. We help you trend and send stories to front pages.

Unfortunately, live streams and other videos are not always as accessible as they should be to some who are deaf, hard of hearing, or vision impaired, but I do see changes evolving with transcripts and subtitles. Continuing to have dialogues about OWD’s accessibility needs is already making a big difference. Technology and ingenuity will continue to make Occupy even more accessible to even more people.

Many of us OWD are grateful for those of you (with and without disabilities) who are physically occupying, stepping up and doing the job of the media that the media hasn’t done for a very, very long time. Without you on the front lines, we’d be ignorant in the dark and our voices would never be heard. Now, not only are OWD voices heard, but OWD are helping yours be heard by amplifying. Change is happening and a better world is possible. Together, we are the 99%

This post appeared in a slightly different form first at After Gadget.

One of my PCAs used to have a truck with many excellent, snark-intensive bumper stickers. This was one of my favorites:

It's true, but...

I don’t think it’s entirely fair. It’s a little misleading.

It really should say, “Mall-Wart: Your source for cheap plastic crap, which also . . .

Uses slave labor in other countries for outsourced goods

Violates the Clean Water Act in multiple US states and otherwise engages in practices egregiously harmful to the environment and dangerous to the consumer

Exploits its workers

Busts unions

Systematically and intentionally puts small businesses out of work

Participate in racist employment practices

Has been sued repeatedly for Americans with Disabilities Act violations, such as not allowing people with disabilities accompanied by assistance dogs into their stores

Is owned by people who each make over $18 billion annually, lobby conservative elected officials, but donate less than one percent of their income to charity.” (By comparison, Bill Gates donates over 50 percent of his income to charity.)

But that would make for a really, really long bumper sticker, don’tcha think?

I’ve been wanting to blog about Wal-Mart for quite a while because I noticed when various Occupies began that sometimes stuff was donated to the activists that was purchased at Wal-Mart. I know that many people made conscious efforts to buy food and other supplies from other places, including family owned businesses. I appreciate that. I just want to raise awareness now, as spring arrives and more supplies are being sought again for events — to encourage people to be aware of where your supplies come from. Your water, sign-making materials, media/electronics, food, clothes, camping gear, and on and on. To me, Occupy activists getting donations of goods that were purchased at Wal-Mart is like animal rights protesters eating food from McDonald’s (even if it’s a McSalad).

I think everyone knows that Wal-Mart is evil, but I don’t think most people realize that it’s not just run-of-the-mill heartless-corporation evil. Wal-Mart (like Monsanto) is mind-bogglingly evil. Just when you think they can’t do anything more heinous, they do. You’d be hard-pressed to find any form of despicable activity — human rights abuses (in the US and internationally), animal rights abuses, environmental destruction, problematic trade practices — that they don’t participate in.

I am not trying to guilt-trip everyone who buys things at Wal-Mart. If you have other options, yes, definitely buy everything elsewhere. If you have the money, access to shops other than Wal-Mart, etc., please buy all of your stuff somewhere else.

I understand that in some situations — depending on your location, your income, your access to transportation — Wal-Mart might be your only option for some things. For example, in the town next to mine, the only place you can buy shoes is Wal-Mart. I don’t buy shoes, so this isn’t an issue for me. (Long story.) But I understand that shoes are a necessity, and if you can’t buy them off the internet, you might need to get them from a place you would prefer not to give your money to.

The cool thing about the many, many, many people and organizations who have organized to oppose Wal-Mart is that they understand situations like this. They have a lot of creative and simple suggestions for ways you can still oppose Wal-Mart’s practices even if your options are limited. Indeed, the fact that people end up in situations where Wal-Mart is their only choice is not an accident; the owners of Wal-Mart intentionally squeeze out all competition and keep employees poor so that there is little choice but to shop there.

Wal-Mart controls 25% of the U.S. toothpaste market. Jeff Hess suggests that even if you have to shop at Wal-Mart, buy your toothpaste elsewhere. Wal-Mart tracks this stuff religiously, and they just might take notice.

You can learn all this and more, in entertaining (and sometimes heart-breaking) detail, by watching the documentary: Wal-Mart: The High Cost of Low Price on a DVD that you rent or purchase, or for free online! Please, educate yourself and those activisting with you about where you shop. If you must shop there sometimes, or if you work there, there are still ways you can get involved — to get Wal-Mart to care about health care, to stop new stores from opening near schools (because it has a history of illegally selling firearms, tobacco, and alcohol to minors), and more. You can find out about these opportunities at the Take Action site already mentioned. You can also learn, get inspired, and help workers and communities at Making Change at Wal-Mart.

Question: You were the reporter who brought public attention to Stachybotrys (“toxic mold”) ten years ago. How did you get from mold to chemicals?

Arnold Mann: Actually, when I started writing about “Toxic Mold,” I had no idea what I was getting into. That first Time Magazine story was supposed to be a short piece about sick building syndrome (SBS) for the magazine’s business readers. I went out looking for things like respiratory problems and fatigue, and what I found at Southwest Airlines’ mold-infested Reservations Center at San Antonio was memory loss, seizures, strokes and death. One woman died from a second stroke after being hauled away by ambulance.

That led to a series of cover stories on toxic mold in homes, schools and apartment buildings. But it wasn’t until I interviewed Dr. Claudia Miller at the University of Texas that I saw the big picture—a nationwide epidemic of initiating toxic exposures, from the new carpeting off-gassing in the EPA’s own Washington Headquarters, to the formaldehyde-leaching FEMA trailers, to the many toxic exposures that rendered hundreds of thousands of Gulf War veterans permanently disabled, to the 9-11 workers, and now to the thousands of Gulf of Mexico residents with MCS one year after the BP spill. It’s all part of the same MCS [multiple chemical sensitivity] epidemic.

Front cover of They're Poisoning Us!

Q: What is They’re Poisoning Us about?

A: It’s the heart-wrenching story about the millions of Americans whose lives have been turned upside-down by toxic exposures. It’s about their struggle to find medical help in a world dominated by industry interests that prefer to see MCS swept under the carpet, and a medical mainstream that would prefer to write off what they do not understand as psychosomatic. And it’s about the physicians and researchers who have risked their careers to treat MCS as best they can and try to get to the bottom of this medical mystery. And progress is being made.

Q: You initially had difficulty finding someone with SBS to “put a human face” on the problem because either they were suing or were afraid of losing their jobs if they spoke publicly. What other factors keep chemically injured people hidden?

A: I’ve found that a lot of people with MCS tend to isolate themselves, often because they are regarded as slackers or hypochondriacs by former coworkers, family, and friends. This, I think, is one of the most tragic features of MCS, and I hope that this book will help the friends and loved ones of people with MCS understand what they are going through and that it is not all in their heads. And the fact that they do not get well is the fault of the medical establishment, political influence on the part of industry, and a failure on the part of government to do its job and get this thing into the research labs where it belongs.

Q: Which members of the medical establishment? Who in government – individuals or agencies – is failing us? Is it by neglect or by active cover-ups?

A: The American Academy of Allergy and Immunology dismisses MCS as a “subjective” illness. According to a CDC statement, “there is considerable doubt as to whether or not it actually exists.” For years, the Veterans Administration insisted that Gulf War illness was due to battlefield stress, until a Congressional mandate forced the VA to fund a $75 million study that showed it came from battlefield exposures. Then there’s the American Academy of Occupational and Environmental Medicine’s position statement on mold, which stood for years as an impermeable barrier to anyone claiming mold-related illness in court, until it was revealed that the authors of the statement were making their livings testifying in court on behalf of insurance companies. So it’s no wonder that MCS patients are left out in the cold by mainstream medicine. Physicians who legitimately attempt to treat MCS patients often come under attack by their state medical boards. And those who choose to do research on chemical sensitivity usually wind up losing their university funding.

Q: Was there anything you learned in writing They’re Poisoning Us that particularly surprised you?

A: Yes. How some people sleep at night. For instance: how Southwest Airlines management conceal a toxic mold problem in their San Antonio Reservations Center for years, even as employees were being hauled away unconscious in ambulances after suffering seizures and strokes. Pesticides were also routinely sprayed in the HVAC system and around workers. A number of employees went on to develop MCS.

Or how the Centers for Disease Control and Prevention (CDC) could bring in an outside team of experts to bury its own team’s findings linking the toxic mold Stachybotrys to pulmonary hemorrhaging in infants. Half the outside experts, it was later learned, had served as witnesses on behalf of insurance companies in mold-related lawsuits. And the CDC director at the time was an immediate past president of Prudential insurance. Fifty-three babies from the same mold-infested inner city housing corridor in Cleveland have since fallen victim to pulmonary hemorrhaging. Five have died. Researchers wonder if this may account for a percentage of sudden infant death syndrome cases nationally, but the CDC has done nothing.

Or how the Veterans Administration can turn its back on 250,000 vets suffering from Gulf War Illness.

Or how BP could deny oil spill workers respirators, to avoid the appearance of a “toxic” situation, while government agencies looked on with indifference. Thousands of Gulf workers and residents are now sick and showing signs of chemical sensitivity. But nobody’s talking about it, insiders say, because it’s bad for business.

Q: You describe the unfolding of toxin-induced illness in vivid detail. I found it painful to read because the stories reminded me of my own descent into illness. Have people with MCS shared their reactions to reading their story in They’re Poisoning Us?

A: Yes. Because, as I’ve said, many people with MCS become isolated, they’re surprised to read how many others have the same unusual problems—things like extreme sensitivity to sound and various smells that no one else notices.

Talking to the researchers was fascinating. A whole new world is opening up, despite all the forces trying to hold it back. Dr. Robert Haley did brilliant work with brain scan technology before the VA pulled the plug on his funding and shut him down. I think they were afraid of what he was finding. But just getting a glimpse of Haley’s work, as well as the early work of Dr. Eloise Kailin, the groundbreaking work of Dr. William Meggs, Dr. Grace Ziem and others, is bringing readers hope.

Q: What’s it been like for you to uncover such suffering and corruption? Has this investigation over the last decade affected how you see the world and your place in it?

A: I’ve been writing about medicine for 30 years and I’ve never seen anything like this. I can only imagine what it is like to have one’s life taken away by a toxic exposure and then to have doctors turn their backs on you while government and industry conspire to suppress the science that is your only hope. It speaks volumes about the power of money.

Q: Speaking of the power of money, I’ve really hoped that your Time byline would lend credibility to the MCS issue, and They’re Poisoning Us would finally blow the lid off industry’s role in hiding MCS. How has the book been received by mainstream media?

A: There has been some response, but it’s been tough. Most media is afraid of losing sponsors, I’m told, especially in these hard times, and this book does not shy away from pointing out bad behavior on the part of industry, or physicians, for that matter, who have gone to the dark side, shilling for industry, or taking advantage of desperate patients. Like the physician who billed a family $60,000 for one day of testing, or another who charged an MCS patient $250,000 for treatments that had no benefit.

But the book is getting media attention, and from some outlets one would not expect. Accuracy In Media (AIM), a conservative website known for being very skeptical about environmental groups and alternative medicine, devoted an hour of radio time and featured it on their website. Why? Because after reading the book, they came to the conclusion that MCS is “America’s Hidden Epidemic,” which has been ignored by the mainstream media. A number of other conservative websites linked to the AIM interview, thus joining the cause.

This gives me hope that it is possible to change public perception about multiple chemical sensitivity. If the evidence is properly presented, they will get it.

Back cover of They're Poisoning Us!

Q: What do you hope this book will accomplish?

A: From the time I started it, I hoped that this book would help change national perception about MCS, put pressure on government agencies to get the research going, and let the millions suffering from MCS know about new advances on the research and treatment front, and finally, to let people with MCS know that they are not alone.

Q: Reviews and press releases for this book primarily use terms such as “chemically disabled” or “Gulf War Syndrome.” Why not use “MCS” or “multiple chemical sensitivity”?

A: The word “sensitivity” at times just didn’t seem strong enough. I wanted the reader who does not suffer from MCS to understand just how “disabling” condition this is. Further, this condition has fallen under many names. And it was important to point out, as Gulf War Illness researcher Dr. Haley said, “They’re all the same.” Denise Nichols, an Army nurse, told me that she and other vets had come to regard Gulf War Illness as a thing unto itself, and that the book reminded her that they are part of a world of people stricken with this disease.

Q: How can activists help this book gain attention?

A: Pass it on to friends and family to let them know what you’re going through, and pass it on to people in the media. And blog the hell out of it. Social media is the most powerful thing in society today. If it can bring down tyrannic governments, it can get our government and mainstream medicine moving on this growing epidemic. Because nobody is immune.

Q: You don’t have MCS, but in your role as a health reporter, you have become something of a crusader for MCS and environmental health issues. Why are you so passionate about this topic?

A: If a reporter is fortunate, he or she will at some point hook into something that is bigger than them; something that will engage them completely, both intellectually and emotionally. If they are real lucky, they will help bring about a change in national perception. The toxic mold stories I wrote for Time and USA Weekend hit a national nerve. I hope this book will hit that same national nerve for MCS. Injustice has always been a powerful motivator for me.

On a more personal note, my brother, along with many other infants of his day, lost a great part of his life to medication-induced stroke at birth.

Q: You’ve talked about the progress being made by researchers, in particular by Dr. Haley. What’s changing in research around chemical injury?

A: Despite everything working against them, researchers are making progress on the MCS front. Drs. Meggs, Haley, Mahamed Abou-Donia, and others have demonstrated the effects of MCS on the nervous and the immune systems, as well as identifying genes that make certain people more susceptible to developing MCS.

Some of the most exciting work has been done by Dr. Haley. Using sophisticated brain imaging technologies, he has been able to show specific areas of veterans’ brains that have been damaged by their exposures during the Gulf War. That was before the VA pulled his congressionally mandated funding halfway through the five-year study. Why? The VA said it was because Dr. Haley changed the patient consent forms, denying the VA access to veterans’ medical records from the study. The problem, Haley said, was that he was having trouble recruiting vets for the study because they feared loss of their VA benefits—such retribution had been documented by congressional action against the agency in the past. The VA called Haley’s change in the consent forms a violation of his contract and shut him down, but not before he managed to get some good pictures of this disease in action.

And physicians like William Rea, Kay Kilburn and Ziem are making progress on the treatment front. So it’s not all bad news. Not by a long shot.

Q: To give readers a taste of the book, and because this is a Maine publication, I wanted to close our conversation with an excerpt about Dr. Meryl Nass, a physician at Mount Desert Island Hospital in Bar Harbor. This is from the final chapter, with the misleadingly dire-sounding title, “Treating the Untreatable,” because it’s actually more of a tribute to the oft-maligned doctors who are helping people. Dr. Nass is one of them!

Tucked away in the small coastal resort town of Bar Harbor, Maine, Dr. Meryl Nass has set up her own oasis for treating the chemically sensitive.

An internist, Dr. Nass got her first look at chemical sensitivity in July of 1993, when she was called to investigate an outbreak of blindness in Cuba. A member of Physicians for Social Responsibility, Nass had spent the previous three years investigating an anthrax epidemic in Zimbabwe, which turned out to be from a biological warfare attack. She became one of the nation’s leading experts on anthrax, publishing many papers. Cuba turned out to be the same story with a different weapon—cyanide. A cutback of public food rations by the government left the people with protein and vitamin malnutrition and unable to detoxify the cyanide.

“So a little bit of cyanide went a long way,” Dr. Nass said.

More perplexing to Nass were the mysterious multiple system symptoms the Cuban cyanide victims were experiencing, such as diffuse muscle weakness, fatigue, emotional instability, cognitive difficulties, and problems with their autonomic nervous systems.

When she got back to the U.S., she decided to start by looking into chronic fatigue. . . . [I]n 1998 she set up her own private practice to treat people suffering from chronic fatigue and related multiple symptom syndromes. She got plenty of referrals.

“Other doctors were happy to send patients to me because they didn’t have any idea what to do for them,” she said.

After nearly going broke in private practice—the time required to work with these multi-symptom patients is enormous and there’s little insurance reimbursement—she took a staff job at Mt. Desert Island Hospital with the proviso that she could set up an environmental clinic there as well. People have since come to her from all over. She was recently called to speak at the aforementioned Gulf War Research Advisory Committee meeting in Boston, which is where I met her.

Nass’s strategy in treating complex, multiple symptom disorders in their various incarnations, like MCS, chronic fatigue syndrome, fibromyalgia and Gulf War Illness, is to go after the symptoms, one at a time, with evidence-based treatments that have demonstrated effectiveness for each symptom. . . .

More than anything, the chemically sensitive need time, which is scarce in today’s medicine. Dr. Nass calls it “patient-centered care.” She saw the need for it from the beginning. “People would come into my office with color-coded note books,” she recalled, “because if they didn’t write everything down, they couldn’t remember it.

“Unless you provide a setting for them to receive care and advice which they can take home and remember, and talk to them between visits, you’re not going to make a dent in their illness. This is particularly true when you’re giving them things like complicated diets or talking to them about things like environmental remediation if they’re chemically sensitive.”

Spending time with patients also gives them the feeling of being legitimized, even if the treatment options are limited.

“I tell my patients, we have no cure, we don’t understand the illness, but we have ways of ameliorating a variety of symptoms which will lead to improved quality of life,” she said.